How did you find about metastasis after the surgery?

foroughsh
foroughsh Member Posts: 779 Member
edited October 2014 in Kidney Cancer #1

Hello

I had an emergency radical nephrectomy after they diagnosed a 10cm rcc in my right kidney. The tumor was confined to the kidney and no metastasis was shown in CT,  chest  x ray, surgery and pathology result. Also nothing to worry about in an ultrasound one month ago. (no lung and bone CT yet) my next abdomilan and pelvis/lung CT is next month.  I'm 36 and don't have a big problem in my health now but as soon as I feel a pain I relate it to metastasis.

 my problem is  whenever I have a pain in my bone I think it's a bone metastases, have a pain in my head I guess it must be a brain metastasis, have a pain in mt left, think it's my left kidney and a recurrence other there, and the worst is when I cough especially at night. I wake up thinking all night about the cancer!!!! These pain don't last long, just few seconds or moments and then there's no pain in that organ any more

I'm 24/7 on net trying to find info about rcc, but couldn't find anything about the timing a metastasis needs to grow especially at my age? What is your experience? Did you all find metastasis on  your routine CT  or after a pain in the organ? or is it possible to grow so aggressively in last two months since my surgery?

and the second question, my surgeon whom I trust 100% is uro-oncologist, do you think I should be under his supervision or find an oncologist?

Forough

 

 

Comments

  • todd121
    todd121 Member Posts: 1,448 Member
    Follow Up Care

    When were you operated on for your RCC? 

    I understand your worries. I have the same. My nephrectomy was 2 years ago in December.

    Have you had a nuclear bone scan? That might give your mind a rest as far as bone mets are concerned. I entered a drug trial with the idea that I'd be followed more closely and get to know a top RCC oncologist "just in case". So far I'm happy with my choice for the most part.

    I think anyone can follow you (uro-oncologist, oncologist) as long as they are following the national cancer institute guidelines for followups. I had a post further down where I posted a link to the website where you can download the guidelines yourself and see what is recommended.

    You would have been Stage 2. I was Stage 3. The risks are similar to each other (mine a little higher risk for recurrence than yours) so I would expect your followups should look like mine. For first year I had a CT scan of chest/abdomen and pelvis every 4 months (I believe recommendation is 3-6 months minimum). I had a nuclear bone scan at the beginning to rule out bone mets (I had a small lesion on a femur bone visible on a CT, but it turned out not to be cancer). CT's should be done with contrast if possible. X-rays and ultrasounds aren't accurate enough to catch early mets (from my understanding).

    If you're getting the imaging done on a regular basis, I would expect you would see things on the images before you would feel them. However, like you, I panic at pain or feeling bad/weird, etc. I think that's normal. I've had a few issues come up which turned out to be nothing.

    If you can find a good oncologist to see you, I would do it for peace of mind. One with some or a lot of RCC experience would be the best. I know from experience that if you are considered NED, the RCC expert may not want to follow all your little concerns that turn out to be nothing. However, they might be willing to schedule and do your followups. I did the trial mainly to get my foot in the door. The success was mixed (I'm glad to explain that statement).

    Just make sure you're getting the recommended follow ups according to the guidelines if you decide to stick with your uro-oncologist. Personally, I'd rather be followed by an oncologist. Tha'ts who is going to treat you/manage your treatment if, heaven forbid, you do progress.

    If it makes you feel any better, unless you have a genetic form of RCC (not common), it's very unlikely for your next recurrence to be in your other kidney.

    You didn't mention your Furhrman grade of your tumor or type of RCC? Clear cell? What grade (1-4)? 4 is more aggressive than 1. That might help us answer your question about how fast it can grow. Generally, not so fast that you'd feel something in 2 months unless unusually aggressive type.

    Best wishes,

    Todd

  • DonMiller
    DonMiller Member Posts: 109
    todd121 said:

    Follow Up Care

    When were you operated on for your RCC? 

    I understand your worries. I have the same. My nephrectomy was 2 years ago in December.

    Have you had a nuclear bone scan? That might give your mind a rest as far as bone mets are concerned. I entered a drug trial with the idea that I'd be followed more closely and get to know a top RCC oncologist "just in case". So far I'm happy with my choice for the most part.

    I think anyone can follow you (uro-oncologist, oncologist) as long as they are following the national cancer institute guidelines for followups. I had a post further down where I posted a link to the website where you can download the guidelines yourself and see what is recommended.

    You would have been Stage 2. I was Stage 3. The risks are similar to each other (mine a little higher risk for recurrence than yours) so I would expect your followups should look like mine. For first year I had a CT scan of chest/abdomen and pelvis every 4 months (I believe recommendation is 3-6 months minimum). I had a nuclear bone scan at the beginning to rule out bone mets (I had a small lesion on a femur bone visible on a CT, but it turned out not to be cancer). CT's should be done with contrast if possible. X-rays and ultrasounds aren't accurate enough to catch early mets (from my understanding).

    If you're getting the imaging done on a regular basis, I would expect you would see things on the images before you would feel them. However, like you, I panic at pain or feeling bad/weird, etc. I think that's normal. I've had a few issues come up which turned out to be nothing.

    If you can find a good oncologist to see you, I would do it for peace of mind. One with some or a lot of RCC experience would be the best. I know from experience that if you are considered NED, the RCC expert may not want to follow all your little concerns that turn out to be nothing. However, they might be willing to schedule and do your followups. I did the trial mainly to get my foot in the door. The success was mixed (I'm glad to explain that statement).

    Just make sure you're getting the recommended follow ups according to the guidelines if you decide to stick with your uro-oncologist. Personally, I'd rather be followed by an oncologist. Tha'ts who is going to treat you/manage your treatment if, heaven forbid, you do progress.

    If it makes you feel any better, unless you have a genetic form of RCC (not common), it's very unlikely for your next recurrence to be in your other kidney.

    You didn't mention your Furhrman grade of your tumor or type of RCC? Clear cell? What grade (1-4)? 4 is more aggressive than 1. That might help us answer your question about how fast it can grow. Generally, not so fast that you'd feel something in 2 months unless unusually aggressive type.

    Best wishes,

    Todd

    Follow up Care

    I honestly believe I would be better off getting caught by my wife having an affair than getting caught on the internet reading about RCC. 

    I had a radical Neph  11 CM Stage 3 Grade 3 in October of 2012.  I am older than you and have all sorts of aches and pains from playing football in School and being too fat. I know I am at a high risk of reocurrence but I also know it is extremly unlikely it will be symtomatic before being discovered on a scan.  It's possible especially in the brain which sucks, but I know it is axiety - which frankly I used to look down on people for a little before I got sick. I agree with Todd and am followed by an oncologist.  I don't think there is much to be gained from reading about anything on the internet except for news of new treatments.  It is almost all out of date and it just drives you crazy.

  • thaxter
    thaxter Member Posts: 124
    Found out four months after nephrectomy

    I was stage IV right off the bat--no mets shown on chest & abdomen CT or on bone scan, but when they removed my tumor there was a secondary tumor on my adrenal gland.

    First scan was 1/6 after 9/13 nephrectomy found several lung mets.  Like you I did feel every little ache and pain must be a met, but I remembered my onc saying "if you have any mets I will know before you will." 

  • donna_lee
    donna_lee Member Posts: 1,041 Member
    thaxter said:

    Found out four months after nephrectomy

    I was stage IV right off the bat--no mets shown on chest & abdomen CT or on bone scan, but when they removed my tumor there was a secondary tumor on my adrenal gland.

    First scan was 1/6 after 9/13 nephrectomy found several lung mets.  Like you I did feel every little ache and pain must be a met, but I remembered my onc saying "if you have any mets I will know before you will." 

    Various procedures

    After the Untrasound found the tumors, I was quickly given a Chest, Abdomen, Pelvic CT. and a full bone scan the next day.  That way the Surgeons knew what they might have to deal with.

    With absolutely no symptoms, the enlarging lymph nodes were found on comparison CT's after the first and second years.  In 2007, the node was confirmed as positive by a needle biopsy.  The one in 2008 could not be biopsied due to location, but a PET scan gave caused enough sugar/radiation uptake that it was Dx'd as cancerous, and proved to be on pathology after the surgery.

    Being in tune with changes in your body is great, but don't let it play mind games. Make a mental note, or write it on the list of "Ask the Dr." questions.  If the symptom is still present at your next check up, say something.  Otherwise, try to relax.

    My oncology nurse did listen to me earlier this summer.  I was experiencing fatique, poor sleep, a cough, back ache and muscle aches. After we talked, she also understood there was depression, but she had me return in one month.  Had there not been an improvement in that time, a CT would have been ordered.

    Go buy some bags of candy and enjoy the little spookies tomorrow night. Eat the leftovers.

    Donna

  • todd121
    todd121 Member Posts: 1,448 Member
    DonMiller said:

    Follow up Care

    I honestly believe I would be better off getting caught by my wife having an affair than getting caught on the internet reading about RCC. 

    I had a radical Neph  11 CM Stage 3 Grade 3 in October of 2012.  I am older than you and have all sorts of aches and pains from playing football in School and being too fat. I know I am at a high risk of reocurrence but I also know it is extremly unlikely it will be symtomatic before being discovered on a scan.  It's possible especially in the brain which sucks, but I know it is axiety - which frankly I used to look down on people for a little before I got sick. I agree with Todd and am followed by an oncologist.  I don't think there is much to be gained from reading about anything on the internet except for news of new treatments.  It is almost all out of date and it just drives you crazy.

    Good News on Brain Mets (I think)

    I shared my anxiety about brain mets with Dr. Figlin at Cedars Sinai (one of the docs on the team that developed Votrient). He told me that only 5% of RCC patients ever get brain mets. My understanding was this was of those with metastatic RCC.

    Of course it's possible, but hearing that number just made me feel better. And as a first site of metastasis the number is much, much lower.

    Hope that might help put that gremlin in perspective.

    Also, I've known several people personally that have had 1 or more brain mets treated successfully with radiation or surgery.

    Todd

  • foroughsh
    foroughsh Member Posts: 779 Member
    todd121 said:

    Follow Up Care

    When were you operated on for your RCC? 

    I understand your worries. I have the same. My nephrectomy was 2 years ago in December.

    Have you had a nuclear bone scan? That might give your mind a rest as far as bone mets are concerned. I entered a drug trial with the idea that I'd be followed more closely and get to know a top RCC oncologist "just in case". So far I'm happy with my choice for the most part.

    I think anyone can follow you (uro-oncologist, oncologist) as long as they are following the national cancer institute guidelines for followups. I had a post further down where I posted a link to the website where you can download the guidelines yourself and see what is recommended.

    You would have been Stage 2. I was Stage 3. The risks are similar to each other (mine a little higher risk for recurrence than yours) so I would expect your followups should look like mine. For first year I had a CT scan of chest/abdomen and pelvis every 4 months (I believe recommendation is 3-6 months minimum). I had a nuclear bone scan at the beginning to rule out bone mets (I had a small lesion on a femur bone visible on a CT, but it turned out not to be cancer). CT's should be done with contrast if possible. X-rays and ultrasounds aren't accurate enough to catch early mets (from my understanding).

    If you're getting the imaging done on a regular basis, I would expect you would see things on the images before you would feel them. However, like you, I panic at pain or feeling bad/weird, etc. I think that's normal. I've had a few issues come up which turned out to be nothing.

    If you can find a good oncologist to see you, I would do it for peace of mind. One with some or a lot of RCC experience would be the best. I know from experience that if you are considered NED, the RCC expert may not want to follow all your little concerns that turn out to be nothing. However, they might be willing to schedule and do your followups. I did the trial mainly to get my foot in the door. The success was mixed (I'm glad to explain that statement).

    Just make sure you're getting the recommended follow ups according to the guidelines if you decide to stick with your uro-oncologist. Personally, I'd rather be followed by an oncologist. Tha'ts who is going to treat you/manage your treatment if, heaven forbid, you do progress.

    If it makes you feel any better, unless you have a genetic form of RCC (not common), it's very unlikely for your next recurrence to be in your other kidney.

    You didn't mention your Furhrman grade of your tumor or type of RCC? Clear cell? What grade (1-4)? 4 is more aggressive than 1. That might help us answer your question about how fast it can grow. Generally, not so fast that you'd feel something in 2 months unless unusually aggressive type.

    Best wishes,

    Todd

    Detail about Tumor

    Hi Todd
    The surgery was done on 18/august. Furhman grade:2. The pathology result: Renal cell carcinoma. So-called clear cell type predominantly with eosinophilic cytoplasm . the tumor is confined to the kidney.  no evidence of angiolymphatic invasion.  tumor-free hilar vessels and section of ureter. tumor-free  adrenal gland. 
    Todd,Can I have that link please to make sure my follow up is based on national cancer institute guidelines? 
    I took abdominal/pelvis CT before the surgery and then I must take the second  abdominal/pelvis/ and first lung CT  next month( three months post surgery) and the third CT six month after that. That's what the uro-oncologist told me. He didn't said anything about bone scan!
    Thanks for the information, they're really helpful